Topic: multiple head injuries, MRI lesions, neuroborreliosis
SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
Hey everyone
I had a recent head and neck injury which greatly exacerbated my neuro/head symptoms, so my PCP sent me to a new neurologist for further evaluation.
Most neurologists I've seen have been the worst, so I went in with low expectations. He certainly wasnt too Lyme literate, but he did have some interesting opinions and I'm wondering if anyone else here can relate.
While Lyme treatment has helped a lot with joint pains (except neck), my neuro sx have only gotten worse over the past few years.
These symptoms are mainly: severe & daily head and neck pain, constant dizziness, sensory overload, seizure activity, feeling constantly disconnected/disoriented, cogntive difficulties, fatigue, sleep problems, etc. They are debilitating and I can barely leave the house lately. Even sitting home the brain sensations are terrifying. Many days I can't even sit on my front porch because I'll have seizures if a person or car passes.
Prior to getting Lyme symptoms, I had multiple head injuries and concussions. A couple were major (car accident and a fall) and I also had frequent minor ones from playing competitive soccer.
The new neurologist thinks there is a definite connection saying I didnt fully heal in between injuries, leading to a complex migraine/post-concussive syndrome. And he's unsure if my white brain lesions are from Lyme or these injuries. he is ordering updated brain and cervical MRIs so I'm curious to see what they'll look like.
And thanks to my adorable, but VERY hyper dog, I had ANOTHER severe head injury this past March which I cannot recover from. This freaks me out.
My head symptoms just keep getting worse and I feel like I am not getting oxygen to my brain. My quality of life is terrible. For nearly 5 years I've been surprisingly positive, but now I am getting uncontrollable & severe depression with suicidal thoughts (which I will NOT act on).
I know its stemming from a combo of the lyme, neurotoxins, recent concussion, etc. But also because I am getting worse rather than better and feeling so lost and isolated in this mess. I just don't understand how I went from being an active college student/athlete to this and why I cannot get well after all these years.
Anyone else here have multiple head injuries/post concussive syndrome and having a particularly difficult time healing from neuroborreliosis?
Any suggestions?
I've done long-term high dose abx, including IV and babesia treatment with little resolve in symptoms. Now I am getting more and more sensitive to drugs and feeling way too toxic, yet no matter what I try to do to detox, it doesn't help.
Right now I'm seeing a holistic LLMD who is a little stumped. I'm not giving up on the lyme treatment, but I'm overwhelmed and exhausted from this and desperately need a break-through.
sorry this was so long, thank you for listening (or "reading" rather) Posts: 1563 | From MA | Registered: Jan 2003
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Sad to hear of your pain. I too, years ago, went to a neuro, when they first thought possible MS, who asked me if I had any head injuries. The neuro thought that my symptoms could have been residule from concussions.
Yes, I had two concussions in high-school. Did show jumping & cross country eventing with my horse. We obviously weren't the most graceful horse & rider team.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
I'm sorry to hear that you are having a rough time.
I, too, have had many head injuries thanks to a lifetime of showing horses competitively. Been kicked in the head a few times, landed on my head too many times to count...and yet I still dream of the day when I will ride again. I must be certifiable.
You've got me thinking that maybe there is some connection between my persistent neuro symptoms and a lifetime of head injuries.
I'm sorry that I can't offer insight, just sympathy. Hang in there.
Posts: 98 | From MA | Registered: Dec 2005
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posted
SunRa, I'm not on the board much anymore, but happened to see your post and remember you from a while ago.
Don't have any experience with head injuries or seizures, but from my son having constant headache pain for over four years now, I do understand how difficult the chronic pain and uncertainty can be.
It sounds like this neurologist may be helpful. Have any medications helped with the seizures?
Just wanted to say hang in there and please seek out help if you do ever feel that you might be closer to actually "doing something" about those suicidal thoughts.
One more thing, I know you've done lots of abx, but have you tried bicillin injections? My son and others with long-term chronic Lyme have seen improvement when IV didn't help...just a thought.
Wishing you better days, Nancy
Posts: 688 | From Florida | Registered: Aug 2001
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So sorry for your problems - prayers go out to you.
you know my history - my constant beatings that led to alot of concussions and head injuries and we do have alot of the same symptoms - ofcourse making it worse - weather it could make things worse now is ofcourse. But could the lyme be aggravating the problems already in the brain - thats' a definite yes too.
So i wish i could help you there. kiddo.
Posts: 799 | From home | Registered: Sep 2004
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi SunRa,
Don't have experience or advice, just wanted you to know I'm very sorry you're feeling so rotten and I'm thinking about you.
Are you on any of the fluoroquinolone abx right now? (Levaquin, Cipro....). I have heard these can cause really tough neuro symptoms. I'm pretty sure you're not, just wanted to throw that question out there.
SunRa, you've been a kind and comforting voice for me when I've been in tough times. I want you out of this hard time soon!!!! I am sending my heartfelt wishes that you get some form of relief soon. Hang on, ok?
Maybe it wouldn't hurt to get on some herbal treatment for neuro Lyme, so at least you are covering that base.
At least it sounds like the neuro is willing to keep following you and do tests? Please let me know if I can be of any help re. holistic Dr.
Sending you many, many healing and uplifting thoughts. You are not alone. (((hugs)))
Posts: 1066 | From East Coast | Registered: Dec 2000
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Sunra. I'm so sorry to hear of this. I haven't had any head injuries, but suffered long with neuroborreliosis and many of the symptoms you describe; also multiple brain lesions.
Lyme treatment made a dent in it but not nearly enough.
Recently discovered I had babesia WA1 and MAN, did treating that make the difference between night and day.
I see you have treated for babesia. How certain are you that it hasn't come back? It is surely known for that. Can you test for it again?
The feeling you state as 'not getting oxygen' to your brain is familiar -- I felt that way too, constantly. I just could not think, sometimes could not make sentences. Studies show that babesia WA1 can cause 'disseminated intravascular coagulation' which means exactly what you suggest: there is not enough oxygen getting to your brain.
Sometimes, too, with brain injuries, it just takes time to heal. The right meds to prevent seizures, something decent for pain, and time, as frustrating as that may be. Have you tried Relpax or any of the vasodilators? You might find them helpful as they will increase blood flow.
Sending you a hug and hoping things look up soon. Don't give up!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
dmc ~ "We obviously weren't the most graceful horse & rider team" ..hehee...thanks for the smile (but not laughing at your pain of course!!) Thank you for your response.
Bluetick ~ thanks for the empathy. I'm so sorry you're having similar problems. I hope you can get back to riding some day!
blackmon ~ nice to see you again!! thanks for writing. I'm so sorry your son is still having headaches too. I've been on various seizure meds over the years with not much relief and/or too many side effects. The neuro suggested trying Topomax next. And my LLMD suggested the Bicillin shots, but I would have to pay out-of-pocket, so I'm gonna have to wait on that. It's encouraging to hear so many have had good results though! The Rocephin did actually help me quite a bit, but it didnt last. I hope your son feels better soon.
lymesux ~ I totally forgot about your concussion history we'll have to talk more soon. Thank you for the prayers. I've been thinking of you too!
henson ~ your uplifting message made me smile! Thank you so much for writing. As far as abx, right now I'm just on Doxy, although after getting up to 300mg I got too sick and had to back off. I need to talk to Dr H about our next step. I will PM you soon. Thanks again for your kind words, I really appreciate it.
Michelle ~ I'm so sorry you have similar symptoms. Thanks for the babesia info, that's very interesting. I tested very positive for it through ART again so I definitely still have it. The WA1 is a western strain of it right? I think I've only been blood tested for B.Microti, although I had traveled to the west coast several times before getting sick, so who knows! Which babesia treatment helped you the most? I have a very hard time tolerating the anti-malarials. Thanks so much for your response and warm wishes. I hope you feel better soon too.
Posts: 1563 | From MA | Registered: Jan 2003
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bettyg
Unregistered
posted
Sunra, I'm so sorry to read of all you have been going thru especially the seizures! My best to you SOON.
I've had head injuries as a toddler to age 10. Toddler, climbed up a farm grain trailer and then fell to the concrete floor. Folks noticed memory problems, and I had "head massages" weekly for 3-4 years until my memory came back.
Also later on, fell off TALL SLIDES to concrete base hurting myself again, but no memory loss.
Have you been tested for SLEEP APNEA? I never would have, but tickedntexas suggested it to me 2 years ago and I finally had it done. Yes, I do have apnea & restless leg syndrome.
But, it showed on both nights I was there, I got ZERO DELTA 4 sleep; so my body can't heal or feel rejuvenated! I told people before I hadn't slept in 30-35 years, and this study confirmed that!
My April brain MRI showed a white lesion; radiologist felt it was OLD BLOOD CLOT having caught off the blood flow of that artery.
He didn't know he was looking for lyme disease since the anesthiologist/RN/staff did NOT give him the papers I brought for him showing some lyme MRIs from Harvard. Hugs
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
Have you ever gotten a spect scan at columbia? They can discern between lesions of lyme nature and other nature.
On another note, I hit my neck and base of head really hard last month. I have a wonderful return of brain fog, headaches, and R A G E . Not to mention the fact I've been extremely bytchy. I know it can make the lyme worse.
By the way, please re-edit your post, color it purple, stand on your head, and then space it. Im kidding. ( shes one of my bestest friends, so I can pick on her)
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
bettyg ~ thanks for your response! It's interesting you brought up the sleep study, a previous neurologist had suggested it, but I had some insurance issues and never went through with it.
I'd be curious to see what mine would show since my sleep is terrrible too. Sorry you have all these issues as well. thanks for the good thoughts. I hope you feel better soon too.
Crime ~ hey thanks for the link, I bookmarked it for later. you know, one thing that has really stood out after my recent head injury is changes in my personality -
I've dealt with plenty of lyme rage spells, but this feels more constant, like i'm ALWAYS on edge and irritated and frustrated with the tiniest things, or even nothing at all.
sorry you're dealing with this now too. Our bf's should form a support group
I had a spect scan a few years ago, but not at Columbia unfortunately. I would love to consult with Dr F on this.
Posts: 1563 | From MA | Registered: Jan 2003
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Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
Sun, good to see you hanging round these Phishy parts. So sorry to hear you're feeling so blue.
Yes, I too had 3 sleep studies. They were a nuisance but ruled out OSA as a cause of my sxs. My sleep doc, at a hoity toity Boston hospital was really perplexed at the poor quality of sleep and hyponeas I had. LLMD said it would improve with abx and it has.
I didn't notice any mention of metals or HBO. Have you discussed these with your LLMD?
Keep your chin up... Posts: 1010 | From Mars | Registered: Feb 2004
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
j, i think you can get your spect sent to Columbia if you remember where you had it done at. Maybe he will review it for a small fee, etc?
Lemme know if you find out anything.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
QUOTE: >Michelle ~ I'm so sorry you have similar symptoms. Thanks for the babesia info, that's very interesting. I tested very positive for it through ART again so I definitely still have it. The WA1 is a western strain of it right? I think I've only been blood tested for B.Microti, although I had traveled to the west coast several times before getting sick, so who knows! Which babesia treatment helped you the most? I have a very hard time tolerating the anti-malarials. Thanks so much for your response and warm wishes. I hope you feel better soon too.>
Hi Sunra. Indeed, the WA1 is the western type. However, I think treatment is pretty much the same no matter what the type. I'm into a second month of Mepron/Zith/artemisinin right now and doing fantastic, though the beginning was fairly ugly.
I don't really know a way around the anti-malarials that would be effective in eradicating your babesia. Liz on Lymenet has some really good threads on different treatments she's done; maybe some will be better tolerated? I sure hope so, because getting it under control is going to help you a lot.
I take Topomax at night for headaches but it's also a seizure med (was originally that before discovering it helped headaches). It's a good med.
Wishing you well,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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balance essential fatty acids, phosphotidylcholine for white matter restoration. avoid choline bitartrate--supposedly not good for the liver.
carnitine--processing fatty acids.
vitamin E is supposed to calm down the anxiety impulse from teh diencephalon of the brain to the cortex.(statement made by carlton fredricks in the late 1970s to teh mid 1980s on radio, wor, 710 on a.m. dial). there may be an archive.
search medline for your topic and various nutrients that help brain injuries.
check/call brain injury organizations.
try to verify this: if a calcium supplement is taken when there is a magnesium deficit this might facilitate seizure activity, real seizures, or pseudo-seizures, one cause of the latter being borreliosis-induced neuritis(john bleiweiss, in his essay, "when to suspect lyme"mentions pseudo-seizures due to lyme). Bleiweiss also mention magnesium wasting in lyme.
lithium orotate? or forms of lithium not taken for manic depression? protective of grey matter.
Posts: 2708 | Registered: Feb 2005
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
quote: Sun, good to see you hanging round these Phishy parts.
good to see you too Lymelighter! ahhhh I miss my carefree Phishing days
quote:I didn't notice any mention of metals or HBO. Have you discussed these with your LLMD?
No fillings, but I have been tested for heavy metals and they haven't come up as a priority issue. I looked into HBO a while ago and simply couldn't afford it. Thanks for the suggestions. I hope you're doing well.
quote: I'm into a second month of Mepron/Zith/artemisinin right now and doing fantastic, though the beginning was fairly ugly.
Hi Michelle, thanks for the info. Glad to hear the babesia treatment is helping so much!! The first couple months on Mepron/Zith were unbearable for me, but I do recall feeling better the 3rd-4th months, then developed an allergy to the drugs. Artemisinin makes me very sick, hallucinations and all, so I've been terrified to try it again. I'll look up Liz's posts. thanks.
pq ~ awesome, thanks for all that info!!
Crime ~ thanks, good idea...i'll look into it Posts: 1563 | From MA | Registered: Jan 2003
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I saw where you take Topamax. What dosage are you at? I have been taking it for about 6 months and was up to 200mg. My neuro lyme kicked in and my headaches have increased to very severe.
I am taking relpax again up to 3 times a week(way too much)
Just trying to get others opinions who take it.
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by proud pup: Michelle,
I saw where you take Topamax. What dosage are you at? I have been taking it for about 6 months and was up to 200mg. My neuro lyme kicked in and my headaches have increased to very severe.
I am taking relpax again up to 3 times a week(way too much)
Just trying to get others opinions who take it.
Hi Pup!
I've been up to 200mg before, but am back down to 100mg at night. I taper up or down (slowly) as things get better. Hope soon to toss it! I used to stress over taking it but doctor didn't think it was too big a deal.
Yup, Relpax is da bomb.
Ya gotta love your insurance company. Their idea of a refill: 10 pills. That's a great help for someone with exploding head essentially every day.
I have sometimes been so wretched as to take Relpax WAY more than anyone ought to.
You are sounding a lot like me, around this time last year.
I was thinking I was getting all over the lyme infection in my brain, when in fact I unwittingly also had babesia, and thus was going to have a violently aching brain no matter what.
Tell me you've been tested/treated, so I will feel better about your poor head.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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I'll look up Liz's posts. thanks. 
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